Medical care quality of life of the patient. Assessment of quality of life in various cardiovascular diseases. Development of the doctrine of quality of life in medicine

Social pediatrics

Union of Pediatricians of Russia 2010

The series was founded in 2007.

Series Editorial Board:

A.A. Baranov, chairman; V.Yu. Albitsky, deputy chairman; N.N. Vaganov; A.G. Ilyin; IN AND. Eagle; N.V. Polunina; IN AND. Starodubov; T.V. Yakovleva.

Preface

The relevance of the publication of this book is due to the fact that in recent decades the concept of “quality of life” (QoL) has become an integral part of healthcare and has become firmly established in clinical and medical-social research. The gradual replacement of the biomedical model of health and illness with a biopsychosocial model has led to the need to take into account a person’s subjective opinion about his well-being. The development of the QoL criterion made this possible, which should be considered one of the significant scientific events of the 20th century.

In foreign pediatrics, the QOL indicator is actively used in population studies to develop age-sex standards, monitor various groups of children, assess the effectiveness of preventive measures, and determine the complex impact of chronic diseases on children. In clinical medicine, the QOL indicator is included in the standards of examination and treatment of patients; with its help, individual monitoring is carried out during the treatment of the patient, the effectiveness of therapy and the prognosis of the disease are assessed. The QOL criterion is an integral element of randomized clinical trials and pharmacoeconomic calculations. According to foreign scientists, the quality of life of children can serve as an end point in assessing the effectiveness of medical interventions in the field of prevention, treatment and rehabilitation.

At the same time, in Russia, despite international practice, the problem of QOL research remained insufficiently studied. Works on assessing this indicator were few and devoted, as a rule, to the characteristics of QoL in a certain pathology. The main problem of domestic research was the lack of uniform methodological approaches; the principles of measuring QOL in pediatrics were often violated, which made the results unreliable and incomparable. Practically no medical and social research has been carried out, in particular, determining age-sex standards for quality of life, identifying factors influencing this indicator, regional characteristics of quality of life, studying the possibilities of using quality of life as a parameter for assessing the health status of the child population. The capabilities of the QOL indicator as a criterion for assessing the effectiveness of therapeutic and recreational activities were limited to clinical studies.

The listed reasons led to the need to systematize knowledge about the study of QoL in pediatrics and generalize all the work carried out in Russia on this problem.

This monograph is the result of the work of the laboratory for problems of medical care and quality of life of the child population, created in 2004 at the Scientific Center for Children's Health of the Russian Academy of Medical Sciences, some clinical departments of the Center, as well as a number of studies conducted in various regions of Russia.

We hope that this book will be useful both to scientists who decide to study the quality of life of children, and to health care managers and practical pediatricians.

Chapter 1
Quality of life – definition of the concept, history of occurrence, use in modern medicine

1.1. Quality of life as a socio-economic concept

“QUALITY OF LIFE is a sociological category that expresses the degree of satisfaction of people’s material and cultural needs (quality of food, clothing, comfort of home, quality of healthcare, education, service sector, environment, leisure structure, degree of satisfaction of needs for meaningful communication, knowledge, creative work, level of stress conditions, settlement structure)..." (Philosophical Encyclopedic Dictionary).

The concept of quality of life (QOL) is one of the most important concepts describing the integral characteristics of human existence. Being relatively new, it indicates that life ceases to be an abstract definition and is increasingly associated with individual experience and self-esteem. The theoretical development of the concept of QOL is intended to contribute to the solution of a number of environmental, medical, social and spiritual problems, acting as a criterion in the selection of treatment methods, environmental protection, methods of social protection, in the development of legislative acts, etc. Control over QOL can be considered as the most important the task of biopolitics, the solution of which will allow a person to increase self-esteem and satisfaction with life, and strengthen his social status.

Initially, QOL was considered as a socio-economic phenomenon, reflecting nothing more than the standard of living of the population or certain sections of it on the scale of a single state or community of states. It is in this understanding that the term “quality of life” was first used in 1920 by the American economist A. Pigou.

Pigou placed the quality (or standard) of life of an individual, social group or society as a whole in direct dependence on their well-being and degree of social security.

Active study of the problem of quality of life began in the mid-60s of the 20th century, when the transition to the post-industrial stage of development began in Western countries, which led to public interest in the humanitarian content of economic progress. There is a need to understand the qualitative integrity of the life of society, to assess how well its condition meets qualitative criteria.

The concept of “quality of life” acquired scientific status in sociology, but gradually turned into an interdisciplinary scientific direction that studies the natural, socio-psychological conditions of human existence. Each science that studies man makes its contribution to the development of the integral problem of quality of life, and one can state an extreme diversity, sometimes a paradoxical combination of mutually exclusive approaches to the analysis and definition of this complex multifaceted phenomenon.

Sociologists include in the concept of QoL indicators of the meaningfulness of work and leisure, satisfaction with them, the level of comfort in work and life, the quality of food, clothing, household items, housing, the environment, the quality of functioning of social institutions, the service sector, the level of satisfaction of needs for communication, knowledge, creativity, etc. At the same time, some quality of life is identified with a way of life, lifestyle, standard of living. Others say that this is something opposite to the image, the style, and even more so the level. Still others reduce QoL to the quality of the environment, the level of stress reactions, etc.

In economics, QoL is understood as an indicator of the level of well-being expressed in coefficients, indices or percentages, taking into account factors such as total family income, number of children, cost of the consumer basket, level of social security, etc., and the average is chosen as the standard for comparison indicator of any of the highly developed countries.

Quality of life is an extremely broad, multidimensional, multifaceted concept, broader than standard of living. According to sociologists, QoL has two sides - objective and subjective. The criteria for objective assessment of QoL are scientific standards of people’s needs and interests, in relation to which one can objectively judge the degree of satisfaction of these needs. Objective indicators of QoL include natural (physical, geographical, biological living conditions, level of anthropogenic load on nature) and social (demographic, economic, legal, cultural, health care system, etc.).

On the other hand, the needs and interests of people are individual, and the degree of their satisfaction can only be assessed by the subjects themselves. Subjective indicators of QoL are divided into cognitive, or rational (assessment of overall satisfaction with life, as well as its various spheres), and affective, or emotional (balance of positive and negative emotions).

The results of many studies show that there is a weak relationship between living conditions and subjective self-awareness; sometimes they are mutually exclusive. For example, a high standard of living is accompanied by high loads and stress, and as a result, quality of life decreases. According to D. Forester (1978), there is a principle of inverse proportionality: the higher the standard of living, the lower its quality, and vice versa.

QoL is often defined as an individual’s ability to function in society (work, social activities, family life), as well as a complex of physical, emotional, mental and intellectual characteristics of a person.

Almost all sociological studies conducted show that the population, as a rule, perceives QoL as a set of needs, problems and expectations in various spheres of life.

The variety of approaches to assessing QOL, the lack of universal characteristics, the dynamism of life and related needs in a modern rapidly changing society indicate that the concept of QOL cannot be static. It is impossible to imagine that the criteria for life satisfaction of the generation of the middle of the last century correspond to the criteria of the generation of the new century. This feature is emphasized in the definition given by A. Todorov (1980): “Quality of life is a certain social reality that exists in a precisely identified specific historical time, within a given socio-economic formation and manifests itself in the daily life of social classes, layers, groups , separate individuals".

1.2. The concept of “quality of life” in medicine

A significant contribution to the formation of the idea of ​​quality of life is made by medicine, which is currently increasingly focused on the integral, complex characteristics of a person, associated not only with objective indicators of his health, but also with self-esteem and the degree of satisfaction with his life.

Despite the fact that QoL is a systemic phenomenon that covers different aspects of human life, we are primarily interested in the medical aspects of this concept, everything related to people’s health. It was for this purpose that in 1982, Kaplan and Bush proposed the term “health-related quality of life”, which made it possible to isolate parameters describing health status, care and quality of medical care from the general concept of QoL.

The main goal of any medical intervention is to improve the quality of life. It is implemented in solving several specific problems, such as pain relief, restoration of motor functions, etc. Patients need medical assistance, medical attention and care because they are concerned about the symptoms of the disease, the consequences of injuries, etc. The doctor responds to their needs communication, diagnosis, treatment, comfort, education. This activity is aimed at improving the patient's quality of life.

Studying the impact of disease on aspects of human life has always interested doctors. Famous domestic clinicians M.Ya. Mudrov, S.P. Botkin, I.I. Pirogov, G.A. Zakharyin and others were actively interested in the issues of patients’ attitudes towards their illness. To our great compatriot M.Ya. Mudrov owns the catchphrase: “Treat not the disease, but the patient,” which fully reflects the humanistic orientation of Russian medical schools.

Subsequently, the term “internal picture of the disease” appeared, introduced by R. A. Luria in the book “Internal picture of the disease and iatrogeny.” The internal picture includes all the patient’s sensations, including painful ones, as well as “general well-being, self-observation, his ideas about his illness, its causes - everything that is associated for the patient with coming to the doctor, all that huge world of the patient, which consists of very complex combinations of perception and sensation, emotions, affects, conflicts, mental experiences and traumas.” R. A. Luria distinguished two levels in the internal picture of the disease: “sensitive” and “intellectual”. The first level includes the entire set of sensations that are the result of the disease, and the second level includes a kind of superstructure over these sensations that arises as a result of the patient’s thoughts about his physical condition and represents a psychological reaction to his own illness.

The prerequisites for the emergence of the QoL criterion and interest in the problem of the limiting influence of diseases on human life also existed in foreign medicine. In the 16th century, the English philosopher F. Bacon believed that the main task of medicine is to achieve a harmonious state of the human body, which would provide it with a full life: “... The doctor’s duty is entirely to be able to tune the lyre of the human body in such a way and to play it in such a way, so that under no circumstances does it produce inharmonious and unpleasant to the ear consonances.”

Population surveys in Ireland and Australia in the 19th century examined not only the spread of diseases, but also their impact on occupational activities. A significant increase in the number of chronic diseases and an increase in the proportion of older people in the general population structure led to the inclusion in questionnaires used in long-term population surveys in Canada, Finland and the USA, items reflecting the limitation of activities in daily life, and other indicators of impaired body functions.

What reasons contributed to the emergence of the QOL indicator in medicine of the 20th century?

There is a certain cyclical nature in the development of society. Behind the demands of technical growth, development of production and industry, inevitably comes the demand for socio-psychological, moral and ethical adaptation of a person to the changed conditions of the external environment. Thus, the dominance of theories of the “social” (good, education, progress, development of well-being, etc.) is always replaced by theories of the “individual” (development, adaptation, personal improvement).

It is not difficult to trace similar trends in medicine. Over the past century, the biomedical model of health and disease has prevailed. Laboratory and instrumental diagnostic methods based on the biochemical, genetic and molecular levels have developed rapidly. Treatment methods were constantly improved, becoming more high-tech and expensive, and dozens of new, highly effective medications were created. Until now, medicine was clearly focused on objective criteria; it was by these criteria that health was assessed.

At the same time, based only on objective clinical and instrumental data, the doctor stops seeing the patient himself. At the same time, he must pay attention not only to the physiological aspects of treatment, but also to the correction of the psychological state, must highlight the system of social causes that cause diseases, give recommendations on a healthy lifestyle, the behavior style of patients, because one of the most important functions of a doctor is return a person to society, and not just return him to a healthy state.

That is why the biomedical model of health and illness is being replaced by a biopsychosocial (global) model, at the center of which is the patient as an individual, with his subjective ideas about the disease, fears and anxieties, his own observations and experiences. The center of this model was the concept of “quality of life”.

Thus, at a new stage in the development of medicine, the QOL criterion makes it possible to revive at the modern level the old principle of “treating the patient, not the disease.” The problem of QoL guides researchers towards recognizing the individual integrity of each person and puts forward the priority of the interests and benefits of a person over the interests of society and science.

The life expectancy of people in the 20th century in developed countries increased significantly, which was achieved mainly due to the successful fight against infectious diseases thanks to major discoveries in microbiology. Because of this, problems associated with the spread of chronic non-infectious diseases - heart disease, malignant neoplasms, joint diseases, diabetes, etc. - have come to the fore. Constantly emerging new treatment methods can only slow down the progression of the disease, but not eliminate it. Therefore, improving the quality of life of such patients becomes urgent.

In the last decades of the 20th century, respect for the moral autonomy and rights of the patient, providing him with the necessary information, the ability to choose and make decisions, and monitoring the progress of treatment began to become increasingly important in medical ethics. Quality of life assessment is one of the methods for assessing treatment control, based on the most important criterion for the patient - his subjective opinion.

At the end of the 20th century, physicians' treatment decisions began to be scrutinized not only by patients, but by insurance companies and other entities. Government policies of increasing control over health care costs and increasing medical profits shape the shift from independent rationality to formal rationality (tightening rules, regulations, and efficiency). Assessment of quality of life is often the final criterion for the effectiveness of treatment, choice of drug, and the success of rehabilitation measures, which abroad led to the inclusion of this concept in the patient examination program. This is undoubtedly consistent with the WHO concept of continuous improvement of the quality of health care.

1.3. Development of the doctrine of quality of life in medicine

According to a number of authors, the founder of the history of the science of QoL is Professor D. A. Karnofsky at Columbia University, USA, who in 1947 proposed a scale for assessing the physical condition of cancer patients receiving chemotherapy. In 1948, reports appeared on the use of the Visick Scale to assess the condition of patients with gastric and duodenal ulcers. In 1963, S. Katz created the Activities of Daily Living Scale, which was quite simple and could be used in various studies. These first studies were based on a functional approach to the problem, assessing the physical functioning of a sick person as one of the aspects of QoL.

Another direction characteristic of the initial stages of studying QoL in medicine was psychological. The earliest studies of the impact of the disease on a person, both abroad and in our country, were carried out using a psychometric instrument called the Minnesota Multiphasic Personality Inventory (MMPI). However, the conclusions made with its help were one-sided and made it possible to assess the structure and properties of the individual, and not the quality of life.

A new surge of interest in the problem of studying QOL dates back to the end of the 70s, and one can note a generalizing, integral approach to the concept itself, when the authors were no longer limited to studying the psychological or functional status of patients with a certain nosology. The term “quality of life” began to be used officially after its appearance in Index Medicus in 1977.

In 1980, G. Engel proposed a biopsychological model of medicine that takes into account psychosocial aspects in medical research, which, in his opinion, should have turned medicine into a more “humane” science. In 1982, A. McSweeny identified four aspects to determine QoL: emotional functioning , social functioning, daily activities and leisure activities.

N. Wenger (1984) gave a more expanded description of QoL in terms of three main dimensions (functional ability, perception, symptoms) and nine subdimensions (daily routine, social activity, intellectual activity, economic status, perception of general health, well-being, life satisfaction, perception of symptoms of the main and concomitant diseases).

An important milestone in the development of ideas about the medical aspects of QOL was the conference “Assessment of quality of life in clinical and epidemiological studies” held in Portugal in 1987, which summarized the accumulated experience in the study of QOL and outlined ways for the further development of this new field of medicine.

Currently, there are more than 50 scientific groups and institutes in the world engaged in the development of methods for studying QoL. The International Society for Quality of Life Research (ISOQOL), whose representative office is also organized in Russia, plays a major role in developing knowledge and common approaches among specialists in the field of quality of life research. In order to systematize activities on the study of QOL, the MAPI Research Institute was created in France in 1995, which coordinates research in this area, approves the developed questionnaires and recommends them for use. Since 1992, a special publication “Quality of Life Research Journal” has been published.

The defining components of the structure of the patient’s quality of life are the patient’s conditions and lifestyle, as well as the patient’s satisfaction with the conditions and lifestyle. Living conditions presuppose the environment in which the patient lives, his level of health, material support, the ability to meet needs in accordance with the culture and value system, characteristic of him. The patient’s lifestyle is characterized by the presence or absence of persistent positive motivation to maintain health and healthy lifestyle skills. But the most important indicator of quality is the degree of patient satisfaction. The criterion for assessing the quality of nursing care can be such a specific indicator as the patient’s health-related quality of life.

It is well known that any disease, to one degree or another, leads to a deterioration in the patient’s quality of life: a decrease in physical activity, a change in the nature of nutrition, the need to carry out medical prescriptions, a narrowing of the circle of friends, and disruption of social relations. All of these changes are, in fact, an adaptation to the changing conditions of a person’s life due to the disease (therapeutic and protective regime and dietary regimen, additional research and drug therapy). The degree of adaptation of the patient to the changed conditions, maintaining the maximum possible independence and activity for him largely depends on the activity in this situation.

The patient’s quality of life level is directly proportional to the patient’s satisfaction with the conditions and lifestyle assessed during a survey of patients and their relatives. Currently, several types of questionnaires are widely used: fan, closed, open, mixed. The fan type involves one answer from a series of answers presented in advance; closed - answers “yes”, “no”, “I don’t know”; open - any form of response. With a mixed type of questionnaire, a number of answers are supplemented with the answer “other”, where the respondent can express his opinion in any form. When developing a questionnaire, it is necessary to remember for what purpose the survey is being conducted, and be sure to include questions containing information regarding physical, psychological and spiritual well-being. The most effective, in the authors' opinion, is a mixed type of questioning. The process of developing a questionnaire includes two more very important points: determining the form and content of the appeal to the consumer of nursing services and developing the form of the questionnaire. A respectful address to the consumer of nursing services and an accessible presentation of the objectives of the survey generate patient trust and increase the objectivity of their answers.

In addition to questionnaires, feedback from consumers of nursing services can be carried out by interviewing patients and their relatives, organizing discussions, for example, with patients suffering from a specific chronic disease, or patients of a certain age group.

UDC 159.9.072.5 © Evsina O.V., 2013 QUALITY OF LIFE IN MEDICINE - AN IMPORTANT INDICATOR OF THE PATIENT’S HEALTH STATE (literature review)

Annotation. The science of studying health-related quality of life has not only taken a certain stage in modern medicine, but also continues to develop progressively. The article provides a review of the literature on the concepts of “quality of life”, “health-related quality of life”, methodology, and areas of application of quality of life.

Key words: quality

life; health-related quality of life; questionnaire.

© Evsina O.V., 2013 THE QUALITY OF LIFE IN MEDICINE - AN IMPORTANT INDICATOR OF PATIENT HEALTH STATUS (review)

Abstract. Studying of the health-related quality of life does not even play an important role in modern medicine, but also continues to develop progressively. The article presents the review of currently available data on the concept of “quality of life” and “health-related quality of life”, the methodology, the applications of quality of life.

Key words: quality of life,

health-related quality of life, questionnaire.

Historical background and definition of the concept “quality of life”. Progress in the development of medical science, changes in the structure of morbidity in the population and an emphasis on respect for the rights of the patient as an individual have led to the creation of a new paradigm for understanding the disease and determining the effectiveness of treatment methods. When doctors began to increasingly realize that an objective reduction in pathological changes (data from physical, laboratory and instrumental examination methods) is not necessarily accompanied by an improvement in the patient’s well-being and that the patient should be satisfied with the outcome of treatment,

medicine has become interested in the patient’s quality of life. In recent years, publications on the quality of life on the Internet have exceeded 4.5 million, and this trend of increased attention to the quality of life is growing every year. In addition to information on the Internet, special methodological manuals and periodicals are available. Thus, judging by the frequency of use of this term in modern literature, quality of life in medicine is a widely used concept, being an integral indicator that reflects the degree of adaptation of a person to the disease and the ability of him to perform habitual functions corresponding to his socio-economic status.

The term “quality of life” (QOL) first appeared in Western philosophy, and later quickly penetrated into sociology and medicine.

The history of QoL research in medicine begins in 1949, when Columbia University Professor D.A. Karnovsky published the paper “Clinical Evaluation of Chemotherapy in Cancer.” In it, using the example of cancer patients, he showed the need to study the entire variety of psychological and social consequences of the disease, not limiting ourselves only to generally accepted medical indicators. This work marked the beginning of a comprehensive study of the patient’s personality, and from this date the history of the science of QOL began. Actually, the term QOL was first used in 1966 by J.R. Elkington in the Annals of Internal Medicine in the article “Medicine and Quality of Life,” focusing on this problem as “harmony within a person and between a person and the world, the harmony that patients, doctors and society as a whole strive for.” The term QOL was officially recognized in medicine in 1977, when it was first included as a category in the Cumulated Index Medicus. In the 1970-1980s, the foundations of the concept of QOL research were laid, and in the 1980-1990s, the methodology for QOL research in various nosologies was developed.

Since 1995, an international non-profit organization studying QoL has been operating in France - the MAPI Research Institute - the main coordinator of all research in the field of QoL in the world. The Institute annually holds congresses on quality of life research (International Society for Quality of Life Research

ISOQOL), introducing into practice the thesis that the goal of any treatment is to bring the quality of life of patients closer to the level of practically healthy people. The ISOQOL branch in Russia has been operating since 1999, and since 2001, the concept of research into quality of life in medicine, proposed by the Ministry of Health of the Russian Federation, has been declared a priority; scientific research conducted using universal tools that meet the requirements of social, regional and linguistic differences is also recognized as a priority. Despite this, QOL research in our country is not widely used, mainly in conducting clinical studies and writing dissertations.

To date, there is no single comprehensive definition of “quality of life”. Below are definitions, each of which to a greater or lesser extent reflects the concept of “quality of life”.

Quality of life is an integral characteristic of the physical, psychological, emotional and social functioning of a healthy or sick person, based on his subjective perception (Novik A.A. et al., 1999).

Quality of life is the degree of a person’s comfort within himself and within the society in which he lives (Senkevich N.Yu., Belevsky A.S., 2000).

Quality of life is the functional impact of a health condition and/or subsequent therapy on the patient. Thus, the concept is subjective and multidimensional, covering physical and occupational functions, psychological state, social interaction and somatic sensations.

According to WHO experts, quality of life is “an individual correlation of one’s position in the life of society in the context of the culture and value systems of this society with the goals of a given individual, his plans, capabilities and the degree of general disorder.” WHO has developed fundamental criteria for QOL and their components:

Physical (strength, energy, fatigue, pain, discomfort, sleep, rest);

Psychological (positive emotions, emotions, thinking, learning, remembering, concentration, self-esteem, appearance, negative experiences);

Level of independence (daily activities, work capacity, dependence on treatment and medications);

Social life (personal relationships, social value of the subject, sexual activity);

Environment (well-being, safety, everyday life, security, accessibility and quality of medical and social security, availability of information, opportunities for training and advanced training, leisure, ecology).

In modern medicine, the term “health-related quality of life” has become widespread, denoting the assessment of parameters associated and not associated with the disease, and allowing for a differentiated determination of the impact of the disease and treatment on the psychological, emotional state of the patient, his social status.

The concept of “quality of life” is multidimensional at its core. Its components are: psychological well-being, social well-being, physical well-being, spiritual well-being.

Methodology for studying quality of life. There are no uniform generally applicable criteria and norms for the study of QOL. The assessment of QoL is influenced by a person’s age, gender, nationality, socio-economic status, the nature of his work activity, religious beliefs, cultural

national level, regional characteristics and many other factors. This is a purely subjective indicator of objectivity, and therefore assessment of the QOL of respondents is possible only in a comparative aspect (sick - healthy, patient with one disease - patient with another disease) with the maximum leveling of all external factors.

The main tools for studying QoL are standardized questionnaires (indices and profiles) compiled using psychometric methods. The first tools for studying QOL - psychometric scales created 30-40 years ago for the needs of psychiatry - were a brief summary of a clinical conversation between a doctor and a patient and were initially cumbersome. Special centers have been created in the USA and Europe to develop such questionnaires. In modern questionnaires, the features contained in the scales are selected using standardization methods and then studied on large samples of patients. Subsequently, the selected features form the basis for carefully formulated questions and answer options selected using the method of summing the ratings.

Thus, in international practice, standardized questionnaires are used, tested in clinical studies and clinical practice.

The following requirements are imposed on QOL questionnaires: multidimensionality, simplicity and brevity, acceptability, applicability in various linguistic and social cultures.

After the cultural and linguistic adaptation procedure, each questionnaire is tested for its psychometric properties: reliability, validity and sensitivity:

Reliability is the ability of a questionnaire to provide consistent and accurate measurements;

Validity is the ability of a questionnaire to reliably measure the main characteristic that it contains;

Sensitivity to change is the ability of the questionnaire to give reliable changes in QoL scores in accordance with changes in the respondent’s condition (for example, during treatment).

Such a complex methodology for the development, transcultural adaptation and testing of questionnaires before their widespread implementation in clinical practice fully complies with the requirements of Good Clinical Practice (GCP).

Novik A.A., Ionova T.I. proposes the following classification of QOL research tools.

Depending on the application:

1. General questionnaires (for children and adults).

2. Special questionnaires:

By field of medicine (oncology, neurology, rheumatology, etc.).

By nosology (breast cancer, peptic ulcer, rheumatoid arthritis, etc.).

Condition-specific questionnaires.

Depending on the structure, there are:

Profile questionnaires are several digital values ​​that represent a profile formed by the values ​​of several scales.

Indexes are a single digital value.

The most common general questionnaires include:

MOS - SF-36 - Medical Outcomes Study-Short Form.

European Quality of Life Scale - European quality of life assessment questionnaire.

WHOQOL-YO Questionnaire QOL-100 of the World Health Organization.

Nottingham Health Profile - Nottingham Health Profile.

Sickness Impact Profile - Sickness Impact Profile.

Child Health Questionnaire - Child Health Questionnaire.

The first six of the above questionnaires can be used in adults, regardless of health status.

The latter questionnaire is used to assess the quality of life of children (under 18 years of age), also regardless of their health status.

One of the important features of the study of QOL in children is the participation of the child and parents in the research procedure. Parents fill out a special questionnaire form. Another feature of the study of QoL in children is the presence of questionnaire modules by age.

General questionnaires (non-specific, used regardless of the specific disease) are designed to assess quality of life in both healthy people and patients, regardless of disease, age or treatment method. The advantage of general questionnaires is that they have a wide coverage of QOL components and allow the study of QOL norms in a healthy population. However, their disadvantage is their low sensitivity to changes in QoL within a particular disease. For example, questions like “How far can you walk?” or “What is the intensity of the pain?” may be useful for patients with cardiac or oncological diseases, but will be less relevant for patients with neurological disease (eg, epilepsy).

General questionnaires may not be sensitive to the most important aspects of a particular disease. Specific questionnaires have advantages in this regard, but they do not allow comparisons between patients with different diseases or with healthy populations.

In many areas of medicine, special questionnaires for assessing quality of life have been developed. They are considered the most sensitive methods of monitoring

the treatment of specific diseases, which is ensured by the presence of components specific to these pathologies. Using special questionnaires, any one category of QoL (physical or mental state), or QoL for a specific disease, or certain types of treatment is assessed:

In cardiology:

The Seattle Angina Questionnaire (SAQ) (1992) - in patients with coronary artery disease.

Minnesota Living with Heart Failure Questionnaire (1993) - in patients with CHF.

Study of quality of life in arrhythmia (1998) - in patients with arrhythmia and others.

In pulmonology:

Asthma Symptom Checklist (1992) - for patients with bronchial asthma

St George's Hospital Respiratory Questionnaire (SGRQ) (1992) and others.

In rheumatology:

Arthritis Impact Measurement Scales (AIMS, AIMS2, AIMS2-SF) (1980, 1990, 1997) and others - in patients with joint diseases (rheumatoid arthritis, osteoarthritis, ankylosing spondylitis) and others.

Each questionnaire differs in the scope of the study, the time required to fill out the questionnaires, the methods of completion and the quantitative assessment of QOL indicators. Most questionnaires have been translated into all major languages ​​with appropriate adaptation to them.

But not everything is smooth in this scientific field. In addition to supporters of the method, there are opponents of studying QoL and creating questionnaires. Thus, Wade D., in his famous book “Measurement in Neutrogical Rehabilitation,” writes that without a clear definition of QoL, it is impossible to measure. He and his co-authors believe that QoL is a concept that is so individual, so dependent on the level of culture, public

education or other factors that it cannot be measured or assessed; in addition, in addition to the disease, the assessment of quality of life is influenced by many other factors that are not taken into account when creating questionnaires.

Goals of studying quality of life in medicine. In the book “Guide to the study of quality of life in medicine” Novik A.A., Ionova T.I. pay attention to two key aspects. On the one hand, the concept made it possible to return at a new stage of evolution to the most important principle of clinical practice “to treat not the disease, but the patient.” Previously not entirely clearly defined tasks in the treatment of patients with various pathologies, clothed in vague verbal categories, have gained certainty and clarity. In accordance with the new paradigm, the patient's quality of life is either a primary or secondary goal of treatment:

1) QOL is the main goal of treating patients with diseases that do not limit life expectancy;

2) QOL is an additional goal of treating patients with life-limiting diseases (the main goal in this group is to increase life expectancy);

3) QoL is the only goal of treating patients in the incurable stage of the disease.

On the other hand, the new concept offers a well-developed methodology that allows one to obtain reliable data on the parameters of patients’ QoL, both in clinical practice and during clinical research.

The applications of QoL research in healthcare practice are extensive:

Standardization of treatment methods;

Examination of new treatment methods using international criteria accepted in most developed countries.

Providing comprehensive individual monitoring of the patient’s condition with assessment of early and long-term treatment results.

Development of prognostic models for the course and outcome of the disease.

Conducting socio-medical population studies identifying risk groups.

Development of fundamental principles of palliative medicine.

Providing dynamic monitoring of risk groups and assessing the effectiveness of prevention programs.

Improving the quality of examination of new drugs.

Economic justification of treatment methods taking into account such indicators as “price-quality”, “cost-effectiveness” and other pharmacoeconomic criteria.

It should be noted that assessment of quality of life may become a mandatory condition when testing drugs, new medical technologies and treatment methods at any stage, including phases 2-4 of drug trials. QoL criteria are indispensable in comparing different treatment approaches:

If the treatment is effective but toxic;

If the treatment is long-term, the possibility of complications is low, and patients do not experience symptoms of the disease.

Studying a patient’s QoL before and during therapy allows one to obtain valuable information about a person’s individual response to the disease and treatment. The main principle of M.Ya. Mudrova “to treat not the disease, but the patient” can be realized using QOL assessment.

The study of quality of life is a highly informative tool that determines the effectiveness of the medical care delivery system and allows us to give an objective assessment of the quality of medical care at the level of its main consumer - the patient. Currently, the problem of improving the quality of life (including in medicine) is key in Russian public policy.

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One of the features of our life has become a new understanding of generally accepted values. The desire to live in harmony with oneself and the surrounding nature for modern people is becoming almost the main guideline in life. We can say that the life of a modern individual is largely expressed through achievements in a healthy lifestyle. For a person to have a comfortable existence, his standard of living must have a certain quality - a positively charged factor, for example, the presence of a spouse, the health of children, the presence or absence of friends, work, leisure, etc. The study of these numerous factors and their influence on a person is quality of life (QoL). Now more than ever, the words of Kant are true, calling on everyone to “treat humanity, both in one’s own person and in the person of everyone else, as an end, and never only as a means.”

I would like to quote the words of F. Engels wrote: “The relationship between quality and quantity is mutual... Quality also turns into quantity, just as quantity into quality... here there is an interaction.” In connection with the above, “the content of medical activity can be disclosed in quantitative and qualitative aspects.” On the one hand, this is “a person’s progressive mastery of the conditions of his own life activity...: maintaining the initial level, correction, regulation, management and, finally, designing a person’s life activity.” On the other hand, medicine is “the fight against diseases, and the protection of health, and its strengthening, and the extension of the period of active working capacity, and the physical improvement of a person, etc.” .

Positive or negative perception of QOL by the person himself has a huge impact on the duration (amount) of life. Centenarians have a way of life, the conditions in which they live, their spiritual component are in harmony and are ideal for them. Moreover, it is not so important what layer of society they occupy. For them, an important indicator becomes some kind of goal, peace, love, life itself... A striking example is the life of the same Immanuel Kant. The great philosopher, who was born a very sick child, developed and throughout his life observed an individual system of work, rest, and nutrition. Thanks to his fortitude, he maintained his body in an active creative state until a very old age. Unfortunately, there are many more examples of the inability to enjoy life as it is. Constant stress, suppressing the immune system, promoting the development of the so-called. diseases of civilization, ultimately shortens the “joyless” life.

But the “quantity” of a person’s life cannot be ignored. It can have both positive and negative effects on its quality. If we take into account that the average life expectancy of men in Russia does not exceed 60 years, and for women on average 67 and it is sharply decreasing, then now people choose pleasures - tobacco, drugs, alcohol, unhealthy diet... But if a person realizes that his behavior entails a reduction in the “amount” of life, and, most importantly, sees the real dependence of maintaining a healthy lifestyle and its duration, then his quality of life will improve.

Since the advent of “healing,” doctors have strived to prolong the lives of patients. But it was only by the mid-twentieth century that these attempts became global. Many authors currently highlight one of the reasons for the growing interest in the problem of QoL in healthcare - this is the development of nanotechnology. The scientific and technological progress of medicine over the past decades has led to the fact that the majority of today's people are unconditionally confident that the independent decision they made is the only correct one. There are more and more patients with chronic diseases that not only progress, but cannot be cured radically. These people rightly demand improved quality of life.

“I’d rather die with my own hair on my head,” as the heroine of D. Longe’s novel “News from Paradise” said, refusing chemotherapy for cancer.

The main method for assessing quality of life is questionnaires, both general and specific. The general Medical Outcomes Study Short Form (SF-36) questionnaire is widely used. There is its Russian form, which is actively used to study the quality of life of patients. The study of quality of life indicators in patients with CVD is also carried out using three questionnaires: Physical Activity Scale, Nottingham Health Profile (NHP), Psychological General Well Being index. In European countries, the NHP questionnaire is more common. The higher the score on the scale, the worse the quality of life. In the USA (Seattle Veterans Affairs Medical Center, Seattle, Washington), quality of life parameters are assessed mainly using two questionnaires: general (SF-36) and special (Seattle Angina Questionnaire-SAQ).

But frequently used questionnaires are designed for patients to fill out independently and are absolutely not suitable for certain groups. For example, those who cannot read or write, the elderly, people with serious musculoskeletal disorders, etc. There is a percentage of error in which patients do not know what to answer, or find it difficult, and this leads to the fact that not all questions are answered, and this entails data loss. There are no such difficulties when interviewing, but this process is quite labor-intensive and requires additional time and labor costs.

One way or another, the dominant method for assessing quality of life is questionnaires, both general and specific. The general Medical Outcomes Study Short Form (SF-36) questionnaire is widely used. There is its Russian form, which is actively used to study the quality of life of patients. The study of quality of life indicators in patients with CVD is also carried out using three questionnaires: Physical Activity Scale, Nottingham Health Profile (NHP), Psychological General Well Being index. In European countries, the NHP questionnaire is more common. The higher the score on the scale, the worse the quality of life. In the USA (Seattle Veterans Affairs Medical Center, Seattle, Washington), quality of life parameters are assessed mainly using two questionnaires: general (SF-36) and special (Seattle Angina Questionnaire-SAQ).

In the SF-36 methodology, higher scale values ​​correspond to a higher quality of life, and in the MLHFQ and Nottingham methodology, on the contrary, a higher indicator corresponds to a lower quality of life. Brief ones are the scale for assessing the clinical condition of a patient with CHF (modifications of Mareeva V.Yu., 2000), which includes 10 questions, and the EQ-5D questionnaire, which provides a three-point scale for assessing answers to five questions.

Initially, the quality of life of patients with heart disease was assessed using general questionnaires: NHP, SF-36, EuroQol. The authors of these studies came to the conclusion that none of the existing tests fully allows adequate assessment of QOL in heart pathology, since a poor reflection of some symptoms inherent in a particular disease was revealed. All of the above demonstrated the need to develop a separate questionnaire for cardiac patients, taking into account the characteristics of QoL.

In addition to supporters of the method, there are also opponents of studying QoL and creating questionnaires. Thus, D. Wade in his book “Measurement in Neurological Rehabilitation” writes that it is impossible to measure QOL without having a clear definition. He believes that QOL is a purely individual concept and depends on the level of culture, education and other factors, which is impossible to evaluate or measure. In addition, in addition to the disease, the assessment of QoL is influenced by many other factors that are not taken into account when creating questionnaires. This point of view is shared by S. Hunt, who believes that quality of life is a hypothetical, theoretical construct that is not subject to quantitative measurement.

The overall assessment of QoL represents exactly that missing information in treatment - the patient’s reaction to his disease and its treatment, thereby helping to clarify the prognosis and, as a result, recovery. This issue was raised at the Russian National Congress of Cardiologists in Kazan in September 2014.

Since QoL problems have become international in scope over the past ten years, the first question that arises is: how comparable are studies of patients’ QoL performed in different languages, in different countries, in different (minority) cultures? For this purpose, before starting to use the questionnaire instrument, it is necessary to determine all possible compatible parameters and only then evaluate the initial result.

Thus, we can conclude that a person’s quality of life is becoming the main indicator of the health of the nation as a whole and determines the country’s health development strategy.

Bibliography

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The measurement of quality of life is based on the patient's assessment of his level of well-being in physical, mental, social and economic terms. QoL is a dynamic state, a function that changes over time, and therefore it should be assessed over a certain period as a changing parameter, depending on the type and course of the disease, the treatment process and the medical care system.

The process of working with such a subtle matter as the patient’s sense of his own quality of life is very complex and time-consuming, and requires a professional approach. Quality of life studies are typically part of a broader clinical research protocol, conducted in accordance with Good Clinical Practice (GCP). The main components of QoL can be measured separately or as a whole using various questionnaires, tests, scales, and indices. Data can be obtained from a personal conversation with the patient, by telephone, based on responses to a questionnaire.

Collecting standard answers to standard questions is the most effective method of assessing health status. Carefully constructed connections between questions and answers, compiled for calculation using the method of summing ratings, formed the basis of modern QOL questionnaires (currently more than 60). Instruments to measure quality of life should be simple, reliable, brief, sensitive, understandable and objective. Modern tools for assessing quality of life are developed using psychometrics - a science that translates people's behavior, their feelings and personal assessments into indicators accessible to quantitative analysis.

Each instrument must have psychometric properties such as reliability, objectivity, reproducibility and sensitivity.

The objectivity of an instrument implies that it can be used to measure what it was intended to measure. Within this property, meaningful objectivity is distinguished, i.e. the degree to which the measured attribute represents the phenomenon under study, and constructive objectivity, i.e. correlation of this test with others that measure related characteristics.

Instrument reliability is the degree of freedom from random errors.

Sensitivity is the ability to reflect changes occurring over time, often minimal but clinically significant.

A number of other requirements are also applied to questionnaires studying quality of life:

• 1 versatility (coverage of all health parameters);
• 2 reproducibility;
• 3 ease of use and brevity;
• 4 standardization (offering a single version of standard questions and answers for all groups of respondents);
• 5 assessment (quantitative assessment of health parameters).

In assessing the quality of life, two groups of questionnaires are used - general and special. General questionnaires are designed to assess the health of the population as a whole, regardless of pathology, so it is advisable to use them to assess health care tactics in general and when conducting epidemiological studies. The advantage of general questionnaires is that their validity has been established for various nosologies, which allows for a comparative assessment of the impact of various medical programs on the quality of life of both individual subjects and the entire population. The disadvantage of general questionnaires is their inadequate sensitivity to changes in health status within the framework of a particular disease.

Special questionnaires are designed to measure the quality of life of patients with a specific group of diseases, which allows the researcher to focus on a specific nosology and its treatment. Special questionnaires allow you to capture changes in the quality of life of patients that have occurred in the last 2-4 weeks.

There are no uniform criteria and standard standards of QoL. Each questionnaire has its own criteria and rating scale. The calculation is carried out on each scale separately (profile measurement) or by summing the data from all scales (calculating the sum of points).

The first official methodology was the WHO scale. In the WHO scale, the score obtained from the analysis of questionnaire data is assigned to a certain characteristic of the standard of living. There are 6 possible gradations in the scale:

• 0 - normal condition, full activity;
• 1 - symptoms of the disease are present, activity is reduced, the patient can be at home;
• 2 - severe symptoms of the disease, disabled, spends less than 50% of the time in bed;
• 3 - severe condition, spends more than 50% of the time in bed;
• 4 - the condition is very severe, 100% or more of the time in bed;
• 5 - death.

The scale, apparently, is the most general and does not assess the patient’s functional activity and his acceptance of his condition, the reasons that led to this condition. This scale became the prototype of modern techniques.

Among general questionnaires, the most popular is the SF-36 (Short Form), a relatively simple questionnaire designed to meet minimum psychometric standards. SF-36, having a fairly high sensitivity, is short. It contains only 36 questions, which makes it very convenient to use for group comparisons, taking into account general concepts of health or well-being, that is, those parameters that are not specific to different age or nosological groups, as well as groups receiving certain treatments. The SF-36 questionnaire contains the 8 health concepts that are most frequently measured in population-based studies and that are most affected by disease and treatment. The SF-36 is suitable for self-administration, computer-based interviewing, or completion by a trained interviewer in person or by telephone for patients 14 years of age and older.

The questionnaire contains 8 scales:

• 1. Limitations of physical activity due to health problems (illness).
• 2. Limitations in social activity due to physical or emotional problems.
• 3. Limitations in normal role activities due to health problems.
• 4. Bodily pain (body pain).
• 5. General mental health (psychological distress or psychological well-being).
• 6. Limitations in normal role activities due to emotional problems.
• 7. Vitality (vigor or fatigue).
• 8. General perception of your health.

Quality of life criteria according to SF-36 are:

• 1. Physical activity (PA). Subjective assessment of the volume of daily physical activity, not limited by the current state of health. Direct connection: the higher the PA, the more physical activity, in the opinion, he can perform.
• 2. The role of physical problems in limiting life activity (RF). Subjective assessment of the degree of limitation in daily activities caused by health problems over the past 4 weeks. Feedback: the higher the indicator, the less health problems limit his daily activities.
• 3. Pain (B). Characterizes the role of subjective pain in limiting his daily activities over the last 4 weeks. Feedback: the higher the indicator, the less pain interferes with its activity.
• 4. General health (OH). Subjective assessment of the general state of your health at the present time. Direct connection: the higher the indicator, the better one perceives one’s health in general.
• 5. Viability (VC). Subjective assessment of your vitality (vigor, energy) over the last 4 weeks. Direct connection: the higher the indicator, the higher he evaluates his vitality (he spent more time over the last 4 weeks feeling cheerful and full of energy).
• 6. Social activity (SA). Subjective assessment of the level of your relationships with friends, relatives, work colleagues and other teams over the last 4 weeks. Direct connection: the higher the indicator, the higher the level of your social connections.
• 7. The role of emotional problems in disability (LI). Subjective assessment of the degree of limitation of one's daily activities caused by emotional problems over the last 4 weeks. Feedback: the higher the RE, the less the emotional status interferes with everyday activities.
• 8. Mental health (MH). Subjective assessment of your mood (happiness, calmness, peace) over the last 4 weeks. Direct connection: the higher the indicator, the better the mood.